‘Confused and angry’

Young Sterling man lives with early Parkinson’s

STERLING – Tom Nelson never thought that, at 30-something, he would wear a medical bracelet, walk with a cane, or sleep in a recliner.

But Tom, 32, has Parkinson’s disease.

In December 2011, he noticed his fingers would move uncontrollably – a back-and-forth rubbing of the thumb and forefinger, known as a pill-rolling tremor. He also noticed his head and hands would twitch, enough that he could not be still enough to shave his beard.

Tom also started falling; he attributed it to clumsiness – bumping furniture, catching the edge of the rug, or tripping over toys in the crowded house.

But his wife, Dacia, 28, was worried. She persuaded him to see the family doctor.

In the meantime, Dacia searched the Internet for answers. She typed “uncontrollable shaking,” “twitching” and “falling” into search engines. She read website after website that pointed to Parkinson’s, a chronic, degenerative neurological disorder. The average age at onset is 60.

Dacia had more questions, chiefly: How could her young, healthy and active husband have a disease that typically affects old people?

Finally, in late January 2012, Tom saw the doctor.

The nurse, noticing his shaking, asked Tom whether he was cold. She listed his symptoms and asked questions, including the last time he had used recreational drugs.

“He looked like a drug addict who needed a fix,” Dacia recalled.

The doctor performed a series of physical tests, all of which Tom failed. He couldn’t touch his finger to his nose; he missed it a few times. He could not repeatedly slap his hands on his legs – first the palms, then the backs; he screwed up the pattern. He couldn’t maintain his balance when the doctor pulled down and back on his shoulders from behind; he stumbled.

“I had read about this test,” Dacia said of the balance challenge. “It’s one of the defining moments in the diagnosis of Parkinson’s disease. ... I was watching my husband change before my eyes ... being taken over by a disease. It was heartbreaking.”

“I was confused and angry,” Tom said.

Tom was diagnosed with early-onset Parkinson’s disease. He now takes seven medications a day – three main doses and two in between for a total of five sets of pills – for tremors, headaches and depression.

He suffers from more than those hallmark symptoms, though. His disease and medications together cause nausea and vomiting, fatigue, sleeplessness and stiffness.

Tom, a former Marine and warehouse supervisor, now is unemployed. He can’t build furniture, play guitar or run. He sleeps in a recliner in the living room so he can more easily get up.

“I just do whatever I can to deal with it and to cope with it,” he said.

It took him about 6 months to admit he needed to use a cane to get around.

“I hated it. I was too young to use it,” he said. “But, I had my jaw dislocated, both shoulders popped out ... my hips dislocated, ribs bruised and been knocked unconscious [after falling] enough times that I gave in.

“I fell, hit my head on the washing machine and knocked myself out. I decided that was it.”

Dacia, a former stay-at-home mom, has gone back to school full time to get her nursing degree. She takes everything in stride, but she worries about her husband.

“I worry whether he’s taken his pills, whether he has his cane, if there’s stuff on the floor,” she said. “I sneak a lot of text messages [throughout the day]. I send a quick ‘I love you’ or ‘How is your day?’ I just need a response; if I don’t get one, I get worried.”

For the most part, Parkinson’s is everyday life for the Nelsons. Tom hardly talks about it or makes light of his symptoms. Dacia doesn’t either; she automatically moves furniture and picks up toys.

“We act like he doesn’t have it and just go on, but something will always remind us it’s there,” Dacia said.

“I don’t want to know [about the disease]. I’d just as soon find out when it gets here,” Tom said. “I’d rather not sit and dwell on what’s going to happen and when it’s going to happen.”

The couple’s eight children, who range in age from 10 all the way down to 1, aren’t really affected by the disease. The younger ones are pretty oblivious to it, while the older ones at least know about it. The family still participates in school events and goes out to eat.

“They do worry about their dad,” Dacia said. “Just this past weekend, [our 9-year-old] asked, ‘Is Dad going to be OK, or is he going to die?’ I had never sat them down and told them about Parkinson’s, so I did, ... and they feel a lot better now. I didn’t realize all the concerns they had.”

The couple have learned a lot about Parkinson’s and want to educate others. They look to actor Michael J. Fox, who was diagnosed with the disease at about 30 years old but did not go public with his ailment for years, as a role model and a beacon of hope. They each have a tattoo of a gray ribbon, a symbol of support for Parkinson’s patients.

Tom won’t go into great detail when people ask about his disease. But Dacia will; she’s even started to write a book about their experience.

“I’ve become a big voice, a big advocate for Parkinson’s disease,” she said. “I have to be his rock, when he needs someone to lean on. I cannot imagine what he is going through. But together we will make it. ... Maybe we can even help a few others along the way.”

Benefit on June 22

"Piledrive for Parkinson's," a benefit for Tom Nelson and his family, is planned for noon to midnight June 22 at the Latin American Social Club, 2708 W. Lincolnway in Sterling.

Funky Munky Wrestling will put on a show, and Knuckle Deep will provide music. A raffle for a television is planned, as well as a 50/50 raffle and a silent auction. Activities for children and a taco bar will be available.

A portion of the proceeds will go to the Michael J. Fox Foundation to benefit Parkinson's disease research, while the rest will go toward medical and living expenses for the family.

For more information or to make a donation, call Dacia Nelson at 815-590-7162 or email pdhelp4tom@yahoo.com.